GI HELL

I asked Ross to be the one to write this entry, but I asked several weeks ago, and he hasn't gotten to it yet, and it's kind of essential in order for anything else we write to make sense.  For the first week of Asher's little life, he was a PERFECT baby.  I kept telling Ross that this wasn't normal, that he was SUCH a good baby, and that it might not last.  Well, it didn't.  He went from loving life, sleeping for several hours at a time (only getting us up twice at night!), eating well, etc., to being miserable.  It all happened in a matter of a few days.  He got progressively fussy, but we attributed it to the formula we had him on that was constipating him.  The pediatrician told us what to switch to, so we did, assuming that would solve the problem.  We could not have been more wrong.

In his first 6 weeks of life, Asher had 5 pediatrician appointments, and a visit to a GI specialist at the hospital.  To date, he has been on 3 medications and 9 formulas.  His pediatrician immediately thought that he was suffering from "silent reflux", and proceeded accordingly.  The first medication did nothing, so he raised the dosage.  Still, nothing.  We changed formula several times hoping that one would help with the reflux (some are specifically designed to do so).  Nothing.  Our pediatrician then prescribed a different, stronger reflux medication, and nothing.  He suggested that we see a pediatric GI specialist at the hospital, so we did that ASAP.  Nothing.  She prescribed a third medication that was supposed to be "immediate" as we continued to wait the 2 weeks for the other medication to "kick in".  Nothing.  NOTHING HAS WORKED.  We waited 12 of the 14 days and after seeing NO improvement at all, decided that the medication wasn't magically going to be a cure on day 13.  We stopped the meds since they didn't help whatsoever, and since he hated having them forced down his throat.  If we would have seen a difference, even though I did not want him on any medication, I would have kept him on it.  I was/am willing to do just about anything if it means it will help him.

There have been no improvements on any of the formulas... some seem to be more horrible than others, but nothing really "works".  At our 6 week pediatrician appointment, our doctor said that he was sick of trial and error and that we needed to get more aggressive to find out what exactly was going on, so we could find a treatment to help little Asher.  FINALLY.  What we have been feeling for the last several weeks.  Reflux in infants is tricky... some newborns have it mildly then grow out of it quickly, some have it moderately and it takes them longer to grow out of it, some babies have it severely and have it well into their toddler years.  Unfortunately, it seems that Asher has a severe case, as NOTHING has helped.  It's not uncommon for medications to be ineffective... for some kids they work like magic, for others, they are useless.  I have done a ridiculous about of research on infant reflux, formulas, etc., and could probably write a book about each one.  When we saw the GI specialist, she mentioned that if none of the meds work, then we might want to try a hypoallergenic formula (duh, we did this already, weeks before we saw her).  She said sometimes if little ones have an allergy to milk protein (NOT lactose) or soy protein then the allergy can cause reflux symptoms.  When we previously tried the hypoallergenic formula, Asher HATED it and would not drink it at all.  I think it was partly because that was when he reflux started getting worse, and also, it smells and probably tastes like crap.  It smells like, really bad rotten fish food.  It's nasty.  We didn't give it long since he wasn't eating it, so we switched back. The GI doctor said that there was another kind of hypoallergenic formula (a different brand) that was slightly different, and to give it a try.  We did.  5 days later, he wasn't better, and actually seemed a tiny bit worse so we stopped.  At the 6 week appointment with our pediatrician he told us to put him back on it until we find out of he has an allergy or not, so we did... for 2-3 days, then he started getting worse again, so we stopped.

At his 6 week appointment on Halloween, he got a bunch of shots, but also had to get blood drawn to do the protein allergy test.  To say it was AWFUL is a huge understatement.  The nurse apparently did not have experience drawing blood from newborns, and she ended up sticking both of Asher's arms multiple times and fishing around for a vein.  He has huge bruises on both arms, and she made Ross and I both pin him down during all of this.  I will NEVER do that again, and will NEVER let another nurse touch him unless I know she has experience with newborns.  We are still waiting on the results of that test.  We are kind of hoping it's positive, only because that will give us a better idea at how to treat it.  If it's him being allergic to the formula, then we have a better idea at what formula will work for him (although it's ridiculously expensive and he hates the taste).  Also, if it's an allergy, hopefully the allergy is what is causing the reflux symptoms.  Hopefully he doesn't have an allergy AND reflux, and hopefully if we can handle the allergy the reflux symptoms will diminish.  Hopefully.  We have no idea.

For those of  you who think we are over-reacting or exaggerating, I can assure you, we are not.  Asher cries for more than 10 hours a day, every day.  His symptoms started with him getting upset during feedings and arching his back and crying... they have progressed hugely, and now he arches his back, turns his head away from the bottle, thrashes his arms and legs, and SCREAMS (not just crying) for EVERY feeding, EVERY time.  Since the reflux is painful, he now has a terrible aversion to the bottle, and is scared to eat.  It used to be that he would eat a tiny bit, reflux, have pain, and then not want any more, but now that he knows the association, he is refusing feedings all together, every feeding, every time.  It takes 1.5 hours for us to feed him about 2oz (he should be taking a minimum of 4-6oz per feeding by this time).  It's 1.5 hours of us fighting him literally kicking and screaming.  Every bottle, every feeding.  We were force feeding him, so the doctors weren't too concerned because he was gaining weight, but he was only gaining because we were making him eat.  Since he's not eating much at a time, he needs to do several "micro" feedings, taking in several more feedings than he normally would since the amount he's eating each time is so small.  This means that we have to endure the HELL that is feeding him VERY often, at least every 2 hours.  He's not sleeping well at all due to the reflux and due to him not ever eating enough to be filled up, which just leads to a vicious cycle that we have no control over.  It's exhausting, frustrating, infuriating, frightening, and desperate.  It's awful, and it's not getting any better any time soon.  Before you say anything, YES, we have tried EVERYTHING.  and NO, NOTHING WORKS.  Also, there is nothing that anyone can really do to help, because since his issues directly surround feeding, we can't exactly let someone else feed him (you would never stand a chance) and just run out for a few hours.  We are in despair and feel more trapped than ever in the sense that after all of these weeks, we have made no progress in helping him, and he's getting worse.  Trapped in the sense that we can't do anything with him and can't take him out anywhere (besides to the doctor's office) because he screams for 1-1.5 hours EVERY 2 hours, and we can't exactly just pop a bottle in his mouth at the park or store or anywhere for that matter.  We don't want to have any guests over because it's a HUGE stress to do so, as Asher doesn't care who is here, he is still going to scream and thrash for hours on end, completely inconsolably, which makes entertaining others pure hell as well.  Trapped in the sense that we've tried everything, and nothing works, and there is no end or relief in sight.  Trapped in the sense that our little pumpkin is 7 weeks old already, and we haven't enjoyed ANY of the time with him yet.  The hospital was a blur because we were so tired and I was in so much pain, and shortly after we returned home, this reflux/GI hell started, so weeks of his infancy have flown by unnoticed.  It feels like we've been robbed of everything, he's miserable and has been robbed of feeling comfortable and safe, and we have been robbed of the normal joys a baby brings into your life.  We are desperately praying that this will change, and change soon, but so far, it's excruciating.  I have not had an easy life, and this is by far the most difficult thing I've ever had to endure.  Praying that relief is on the way.... it can't come soon enough.  Also, we are completely overwhelmed and living minute to minute, just trying to get through the days, so please, give us some grace in terms of communication.  While we greatly appreciate love, support, encouragement, compassion, and prayers, we just don't have the time or energy to reciprocate every inquiry that we receive.  Please know that if we need you, we will definitely call on you, but honestly, there is nothing that anyone can do to "help", aside from the doctors assisting us in properly diagnosing and treating the beast that is plaguing our poor son.  Please join us in prayer, that's how you can help most.  We love you and appreciate you all!

Here are some pics of our brave little man on his way to some recent appointments with the pediatrician... poor little thing.  :(